21 March: International Down Syndrome Day

Publié le : 28 March 2013

 21 March will be the second International Down Syndrome Day, recognised in 2012 by a UN resolution as "a symbolic date chosen in reference to the 3 chromosomes 21 at the origin of the syndrome." To mark this occasion, "15 associations of parents of people with Down syndrome have chosen to share their joy but also their anguish at the ‘anti-Down’ climate," and to "raise citizens’ awareness and inform them about this pathology that is insufficiently understood and about the prejudices attached to it." For this purpose, they have launched the campaign "Down syndrome… and So What!" Among these associations, 10 are European (Spain, Portugal, Croatia, Great Britain, Germany, Italy, Poland and Latvia, with the Collectif les Amis d’Eléonore and the Fondation Jérôme Lejeune for France), 1 Russian, 1 American and 1 from New Zealand.

In recent years, this ‘anti-Down syndrome’ "climate has worsened with the increased recourse to prenatal screening, whose implicit message is the rejection of people with Down syndrome. The enormous investments granted by States to the blood test industry confirm what families have concluded", namely that "the public health policies of States with regard to Down syndrome are consecrated unilaterally to the elimination of this population before birth." In France, points out Emmanuel Laloux, founder of the Collectif les Amis d’Eléonore and president of the association Down Up, "96% of foetuses with Down syndrome are eliminated" and the marketing of new detection tests, "presented everywhere as a great advance, will further accentuate the stigmatisation."           
He asks: "how in this culture of generalised screening, whose implicit message is the rejection of the disabled child, can a couple still desire the arrival of an imperfect child?
In Russia, Down syndrome also faces real intolerance from society: "when the Russian actress Evelina Bledans gave birth to a trisomic child, the first question of the doctors made her shudder: ‘Will you take it or leave it?’". In this country, experts say, "many wrong ideas have survived from the Soviet era."  So "the majority of trisomic children are abandoned by their parents just after their birth" and "they vegetate in institutions for mentally ill patients, with their care reduced to the minimum and without any hope of being integrated into society." Because "trisomic children are rarely adopted by Russian families" and if they do get the chance it is very difficult for them to lead a normal life. Evelina Bledans, the mother of Sioma now aged 11 months, remains "convinced that he is ‘a gift from heaven’ whose mission is to ‘change the situation’ for thousands of trisomic people in Russia." On this point, she mentions that "many young women have written to me to say that after my stand they have finally had the courage to go out in daylight with their trisomic child and not only at night as they did before.
It is in this context that "5 people with Down syndrome, of different ages (a child, a young woman, two young men, and an older man) are drawing the attention of the citizens and political leaders of their country." The objective of this campaign is to "demystify the disorder they suffer from in order to reduce people’s fears and fantasies. Their roguish and cheerful faces remind all society that happiness is possible."

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